Siblings with Childhood Alzheimer's (Roman and Stella)

Roman was diagnosed with childhood Alzheimer's (ASMD) a few days after his parents learned they were pregnant with Stella. This diagnosis came with the heavy knowledge that Stella had a 25% chance of inheriting the same life-altering condition. Stella was later diagnosed with this fatal disease. As both siblings face a devastating regression, their parents are focused on living in the moment and providing Roman and Stella with joyful memories while they all battle this rare disease together.

[ceatonbusch]

You can see the heart break in Dad's eyes.

[joellewhite]

That dad is in permanent grief - my heart breaks for him

[analuciamedeiros]

it's just so sad. they are mourning their kids while they are still alive, while remembering them when they were still healthy... sending much love to this beautiful family❤

[CaraRamzi]

Roman saying “I love you” back to his mother was one of the most beautiful and precious moments I’ve ever seen. Sending you all so much love I pray for a miracle for you sweet angels. 🙏🏼👼🏼🙇🏻‍♂️🪽

[sa-eqli]

I love how mom describes her babies personalities with pure adoration as she looks at them. So much love in this family🥰

[lexiohdancer]

That little boy worked so hard to express his love for his mother.

[erin]

Roman saying “I love you” with all his might 🥹😭 my hearts goes out to this beautiful family

[jenny-kj]

Seeing baby Roman playing with his dad, seeing his smiles, and hearing his giggles broke my heart. I realize life isn't fair, but...this is way beyond not fair.

[Jennifer-rhyt]

The love this father has for his children is powerful. You can see it in his face and in his physical contact with them. It’s beautiful.

[margaretandersen]

I was holding myself together pretty well until I heard sweet Roman saying "I love you" and then I absolutely lost it. God bless them all.

[Angelicax]

This interview has to go on my top 3 or 5 of the hardest interviews to watch.

[Rachel-wpyz]

I genuinely don't know what to say. Humbling doesn't cut it. Hit me hard when the mum said 'God wouldn't do this to us a second time' . I understand that feeling of not understanding' why? ' I too am currently trying to learn how to pack grief away and let it sit alongside me. A tricky thing to master. Sending this little family love and best wishes.

[BlahBlah-emed]

What a cruel diagnosis. What a strong family.

[kathyquinn]

These children are so blessed to have the parents they have. May God bless you all.

[Moonbunny]

‘The hardest part was getting to know your son and daughter and who they really are only to watch that slip away’

How heartbreaking 💔

[BZaks]

I’m a doctor and in my country we have a lot of marriages the same family trees so I saw a lot of children with lysosomal storage diseases in the hospital and it always broke my heart. But so many families left their children in the hospital when they got this diagnosis so this family is very special and strong to have the children with them and taking care of them at home. I think that’s what’s making the biggest difference in their longevity

[alijane]

What a profoundly painful journey these parents are on. Childhood regressive dementia type illnesses are so uniquely harrowing. I think all parents can empathize with this family. Sometimes life is beyond understanding. I hope one day money won’t be a hindrance to science, and all these rare disorders can be researched properly.

[kellyburnett]

No one could possibly understand what these parents have to go through. I am in awe of this family. Love is the strongest and best thing in this world and it is displayed so perfectly with them. Thank you for sharing, it helps me see the world in a more positive way.

[CW-rtsr]

Chris, I think you simply showing yourself sitting with the children and speaking directly to them is so powerful. Thank you. It brought me to tears.

[craftylabtech]

As a lab tech... I can absolutely appreciate how devastating that error was.